Taking every precious day as it comes

epilepsy

The seizures have started. Just as the doctors told us they would. Stupid, I know, but the more time passed, the more I’d let myself hope that they were wrong. Since the first few frantic days of his life, we’d slipped into a nice gentle routine. We’d had only gradual, slow-burn issues to deal with: low weight gain, muscle tone, reflux, respiratory infections. No emergencies.

The fits are not hugely dramatic. They only last a few seconds. There’s no thrashing around on the floor, no breathing difficulties, no loss of consciousness. But they are sudden, unannounced, unpreventable.

I almost wish he weren’t conscious through them. It’s the fear in his eyes and in his new, angry cry that is so awful. I feel powerless; all I can do is hold him. I can’t make this better.

So we caught the train into town and traipsed across The Meadows in the wet snow, hunched over to try to keep Benjamin, in his carrier, dry. The Sick Kids is the only place full of children that I can look around and feel normal. The people here are kind, understanding, non-judgemental. Mostly they have too many of their own cares to worry about commenting on other people’s babies.

It could be just a reflex, the consultant said. Without a video, he can’t be sure it’s a seizure. But I’m sure. I’ve seen his eyes and heard his scream and my instinct tells me this is for real. It all happens so quickly, we said, there’s no time to take a video. That’s good, he tells us. For a seizure to do any damage to the brain it has to last minutes rather than seconds…

…In the next breath he asks us to start looking out for any regression in Benjamin’s abilities. That’s one of my greatest fears, that we might lose the abilities that Benjy has worked so hard for. That we might lose his beautiful smile. That this is the thin end of the wedge: that the seizures will become longer and more frequent; that he will be medicated and hospitalised; subjected to tests and more tests; that we will lose our beautiful boy.

And fear of what this might do to us? Until now, we’ve managed to carry on some semblance of normalcy. Will we now truly become a “special needs family”? People staring at us in the supermarket, children bullying Jackie at school. An endless round of therapists and social workers, benefits and campaigns.

And, if the doctors were right about this, were they were right in their other predictions? He won’t walk, he won’t talk, he will end up feeding through a tube until the end of his short little life. Who was I kidding he’d be some kind of “miracle baby”? Until now, none of this seemed real. Does the beginning of this fear mark the start of the end of hope?